Dementia Care Research Articles

Ensuring continuity of care in times of crisis: A longitudinal analysis of dementia care delivery during armed conflict.

Individuals with dementia are particularly vulnerable during emergency situations due to challenges with cognition, mobility, and daily functioning. However, little is known about how disruptive events may specifically impact the health of those with dementia. To evaluate changes in health outcomes for individuals with and without dementia surrounding the Israel-Gaza war in October 2023. Specifically, we analyzed and compared changes in mental health status, medication adherence, healthcare service utilization, and associated costs between individuals with dementia (Study Group) and those without dementia (Control Group) during the period surrounding the Israel-Gaza war in October 2023. A prospective cohort study compared outcomes between individuals with dementia (Study Group, n = 24,178) and without (Control Group, n = 250,652) before and after the crisis onset. The conflict precipitously threw national systems into disarray, recruited healthcare personnel to the war effort, and disrupted supply chains. Compared to baseline, analysis revealed alterations in patterns of dementia diagnoses, healthcare service utilization, medication adherence, and associated costs during the crisis period for both groups. However, the Study Group experienced comparatively larger declines. Findings provide insights into how humanitarian emergencies, through disruption of health systems and care networks, differentially impact continuity of dementia care. This underscores the need for tailored crisis response strategies to address the heightened vulnerabilities of patients with dementia.

Acceptability of bispectral Index monitoring in end-of-life care for dementia.

Assessing consciousness might benefit the care for people with Alzheimer's disease and other types of dementia at the end of life by indicating distressing symptoms and moments of awareness. This could guide symptom control and increase interaction with the person with dementia. This study aims to investigate the acceptability of a biosignal measurement of consciousness, the Bispectral Index monitoring (BIS), for persons with dementia at the end of life. Qualitative study using focus groups and interviews with demonstrations of BIS monitoring, with 17 individuals with dementia and 24 family caregivers. Qualitative content analysis was based on the theoretical framework of acceptability. People with dementia did not find BIS monitoring bothersome, yet acceptability varied across participants and situations. Family caregivers considered BIS acceptable for medical situations such as palliative sedation and pain assessment. Perceived effectiveness, ethicality, and usefulness considerations underpinned reasons and concerns around acceptability. Potential end-users expressed diverse attitudes towards BIS monitoring in dementia end-of-life care. If BIS or similar technologies are to be implemented in the future, care must be taken to ensure that the device has sufficient added value, that the person with dementia and family are well informed, and that the technology does not replace human care. Future research should investigate its efficacy and feasibility in the situations that were deemed acceptable.

Applying the WANT model in the dementia education and training program to improve the dementia care competence of institutional care workers

ABSTRACT Behavioral and psychological symptoms of dementia (BPSD) are widely recognized as the most challenging aspect of dementia care, often leading to the placement of people with dementia in care institutions. The BPSD symptoms include aggression, agitation, wandering, verbal outbursts, delusions, hallucinations, apathy, anxiety etc. At present, institutional care workers face significant gaps in knowledge, skills, and attitudes necessary to effectively manage BPSD. Hence, a model called WANT was previously developed to assist institutional care workers in managing BPSD; however, empirical testing has not been carried out.‘W-A-N-T’ is the abbreviation of Watch-Assess-Need intervention-Think. To examine the effectiveness of WANT education and training program on enhancing the competence of institutional care workers to manage BPSD. The pre-experimental design was adopted for this study with one-group pretest-posttest design. Five long-term care institutions, including care homes and day care centers, were invited to participate, with the participants including institutional care workers and the resident with dementia (RwD) they care for. The evaluation was conducted using the Dementia Care Competence Scale (DCCS) and the Chinese versions of Cohen-Mansfield Agitation Inventory (CCMAI) for pretest and posttest along with a satisfaction questionnaire. The data analysis was performed using paired t-test. Cohen d was used to test the effect size of the study. A total of 49 care workers and 49 of their RwD (residents with dementia) were involved in this study. After receiving the WANT education and training program, there was significant improvement in the knowledge (p = .002), skills (p = .000), and attitudes (p = .000) among the care workers. Regarding the specific types of agitated behaviors, results showed that only ‘persistent, unreasonable demands for attention or help,’ ‘screaming,’ ‘constant complaining,’ and ‘general fidgeting’ in RwD were diminished (p < .05). The WANT education and training program has the potential to enhance the competence of care workers in managing BPSD and decrease a few agitated behaviors among RwD. It is anticipated that the program will serve as a valuable teaching reference for training care workers in the future, specifically in the management of BPSD.

Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities.

The Geriatric Emergency Care Applied Research Network 2.0-Advancing Dementia Care (GEAR 2.0-ADC) aims to advance research efforts to improve the emergency care of persons living with dementia (PLWDs). To support this objective, GEAR 2.0-ADC convened a virtual consensus conference to prioritize emergency care research opportunities for PLWDs inclusive of perspectives of PLWDs to ensure identification of research gaps in response to their experiences and priorities. Inclusion of PLWDs as research partners is increasingly recognized as a best practice, however, approaches to facilitating consensus participation are lacking. Best practices for supporting the engagement of PLWDs in a consensus conference, applied across its three phases (pre-conference, during the conference, and post-conference), include: establishing a learning environment focused on research priorities before the event, presenting information in ways that align with participants' learning preferences while accommodating cognitive impairments, and providing multiple opportunities and methods for gathering post-conference feedback from PLWDs. These strategies were identified by PLWDs and care partners (CPs) through semi-structured interviews, who were involved in the convening process, aimed at exploring ways to enhance facilitation techniques for participants. Additionally, these summarized insights aim to encourage the use of community-engaged approaches in discussions and consensus-building around research priorities in emergency care, particularly for PLWDs and their CPs.

Nakoda Oyáde Ománi Agíktųža: Adapting the Canadian Indigenous Cognitive Assessment in a Nakoda First Nation Community.

Increasing rates of dementia in First Nations populations require culturally grounded approaches to dementia diagnosis and care. To respond to the need for a culturally appropriate cognitive assessment tool, a national team of health services researchers and community partners, guided by a Nakoda Advisory Group, aimed to adapt the Canadian Indigenous Cognitive Assessment tool for a Nakoda First Nation in Carry the Kettle First Nation, Saskatchewan, Canada. The adaptation of the CICA for a Nakoda First Nation community resulted in a slightly modified version of the CICA signalling that the CICA requires minimal adaptation to be used in different First Nations contexts.

Factors influencing the care burden among family caregivers using dementia care centers for older adults with dementia in Korea: a cross-sectional descriptive study

Factors influencing the care burden among family caregivers using dementia care centers for older adults with dementia in Korea: a cross-sectional descriptive study

Sleep deprivation in dementia comorbidities: focus on cardiovascular disease, diabetes, anxiety/depression and thyroid disorders.

Sleep disturbances are a significant concern in individuals with dementia, affecting their overall health and quality of life, as well as that of their family members and caregivers. Dementia, a progressive neurodegenerative condition marked by cognitive decline, often coexists with various comorbidities such as cardiovascular disease, diabetes, obesity, anxiety/depression and thyroid disorders. These comorbidities can further impair cognitive function and complicate the clinical management of dementia, making it essential to address them in a holistic manner. This review critically examines the complex interplay between dementia and its associated comorbidities, with a special focus on the prevalence and impact of sleep disturbances. Sleep problems in dementia patients are not only common but also contribute to a faster progression of cognitive decline and increased burden on caregivers. The article explores the mechanisms by which these comorbidities, including cardiovascular conditions and metabolic disorders, exacerbate sleep disturbances and cognitive impairment in dementia patients. By synthesizing recent research findings, the review highlights the importance of identifying and managing modifiable risk factors for sleep disturbances in dementia. Integrated treatment approaches that address both cognitive and sleep-related challenges are essential for improving patient outcomes. The review also underscores the need for further research to develop targeted interventions that can effectively manage sleep disturbances in dementia, thereby enhancing the quality of life for both patients and caregivers. Understanding the relationship between dementia, comorbidities, and sleep disturbances is crucial for the development of comprehensive care strategies. This review aims to inform healthcare professionals about the current state of knowledge and encourage the implementation of evidence-based practices in dementia care.

A Roadmap of Noninstitutional Living Options for People with Dementia: "Don't Fence Me In".

Canadians overwhelmingly do not want to live in long-term care institutions (LTCIs) when they age; yet many end up there for lack of home care, because family care partners burn out, or because they and their professional advisors are unaware of alternatives to institutions. Not only is institutional dementia care riven with problems, it segregates disabled people, thereby abrogating human rights. Because systemic ageism and ableism cloud seniors' care, institutions remain the default option for Canadians with dementia. Yet, decades of deinstitutionalization enabled younger disabled Canadians to live in the community with supports. Why not seniors? We describe a plethora of noninstitutional dementia-care alternatives. We then present a roadmap for considering all relevant care options in service plans, one that incorporates supported decision making by people with dementia. We propose a paradigm shift in how Canada serves its senior citizens - not just the current generation, but those to come, including ourselves.

Evolving dementia care: An explorative study on the lived experience of older adults living with dementia in nursing homes using observational and biometric sensor data.

This study explores the lived experiences of older adults with dementia in Dutch nursing homes, focusing on daily activities and emotional responses. With a growing number of older adults with dementia, gaining a deeper understanding of their lived experience is imperative. Using a mixed-method narrative approach involving observations, informal interviews, and physiological monitoring through wearable sensors, the study engaged eight participants in psychogeriatric wards across two Dutch nursing homes. Observations and interviews aimed to provide context to daily activities, while wearable sensors tracked emotional responses through heart rate (HR) and heart rate variability (HRV). Key activities included eating, drinking, communication, mobility, and inactivity. Positive experiences were consistently observed during eating and drinking and communication, respectively influenced by the nursing home's social and organizational structures and social and personal contexts. In contrast, mobility and inactivity exhibited diverse physiological responses, reflecting a range of stress, concentration, or relaxation. This study offers valuable insights into the lived experiences of older adults with dementia in nursing homes. It highlights the generally positive nature of eating and drinking, shaped by social and organizational factors. Communication's impact varies with individual context. The study also reveals a complex interplay of emotions during activities related to mobility and inactivity, as evidenced by diverse physiological responses. Regarding implications for dementia care, the study emphasizes the need to redefine 'inactivity' as 'under-stimulation,' assess appropriate (in)activity levels, and acknowledge the significance of the nursing home's physical and organizational context. This redefinition should distinguish between 'physical' and 'mental' inactivity, address concerns related to under-stimulation, and cater to individual preferences. Recognizing the residents' restricted environment and reliance on care professionals and volunteers underscores the urgency of tailored approaches. Addressing these implications can provide fresh perspectives for evolving dementia care, creating a more supportive environment that promotes well-being.

Long-term effects of collaborative dementia care on quality of life and caregiver well-being.

Collaborative dementia care models with care navigation, including the Care Ecosystem, improve outcomes for persons living with dementia (PLWDs) and their caregivers. The effects of continuous care over long periods have not been studied. In this randomized clinical trial with 456 PLWD-caregiver dyads with high caregiver burden, we evaluated the cumulative 5-year treatment effect on PLWD quality of life, health care utilization, caregiver depression, self-efficacy, and burden. Five-year participation was associated with higher quality of life, lower caregiver depression, and higher caregiver self-efficacy (all p's<0.05) with a trend for lower burden (p=0.07). Treatment effects were most robust during the first 2 years. The effects on emergency department visits and hospitalizations were not significant. The benefits of collaborative dementia care on PLWD quality of life and caregiver well-being are sustained for 5 years, and the dyads may experience the greatest benefit during the first 2 years. Collaborative dementia care with care navigation was evaluated over 5 years using a randomized clinical trial. The care was associated with better quality of life for the person with dementia and well-being for the caregiver. The most robust treatment effects were in the first 2 years.

Dementia and Video Games: Systematic and Bibliographic Review.

This systematic and bibliographic review examines publications in the field of dementia and video game research from 2004 to 2023. The main objective is to assess developments and trends in video game technology for dementia care and detection. The PubMed database was the primary source for publications. PRISMA guidelines were applied to structure this review. Ten variables were defined, investigated, and split into three main categories: bibliographic, medical, and technical. The results were synthesized using a quantitative approach to reduce bias through interpretation. Of 209 initial results, 77 publications have been included in the investigation. More studies focus on rehabilitation over assessment and detection of dementia. Clinical trials are typically conducted with limited participants. The most populated trials rarely enrol over 300 subjects. On average, around 38 subjects were enrolled in the trials. These studies are commonly supervised by a trainer or technology specialist, suggesting a technology gap in familiarity in the trial demographic. Most interventions assessed were custom-designed applications with a specific outcome, focusing on physical activity and cognitive exercises. As the first of its kind, this publication focuses on the technical aspects of applied technologies and development methods. Using video games to treat and detect patients with cognitive impairments like dementia can benefit healthcare professionals, caretakers, and patients.

Community health workers supporting diverse family caregivers of persons with dementia: Preliminary qualitative results from a randomized home-based study.

Culturally diverse informal caregivers of community-dwelling persons with dementia face challenges in accessing dementia care resources due to language barriers and cultural stigmas surrounding dementia. This study presents the perceived intervention experiences of a home-based approach which considers the cultural and linguistic needs of diverse family caregivers in dementia care. The intervention model includes home visits by trained bilingual, non-licensed community health workers (CHWs) whose cultural histories and understandings reflect that of the caregivers. The purpose of the present study was to understand family caregivers' experience in caregiving and their feedback on the intervention, which includes caregiver support through education and skill development. The present study thematically analyzed qualitative data from exit interviews with caregivers who participated in a CHW-led, 12-week home visit-based intervention program. Among 57 caregivers (mean age = 63.5, SD = 14.3) who participated in the 3-month home-visit intervention and completed the exit interviews, 33% were Korean Americans, 28% Vietnamese Americans, 21% non-Hispanic Whites, and 17.5% Latino/Hispanic. The majority were females (81%) and spouses (51%). Main themes include, (a) Individual Level: Improvements in Caregiving Self-efficacy and Self-care Awareness, (b) Relational Level: Enhanced Communications and Relationships with Persons with Dementia, and (c) Community Level: Connection and Access to Community Resources and Support. Interview data show that the culturally and linguistically tailored program supported diverse caregivers by increasing self-care awareness, improving knowledge about dementia and dementia care, strengthening communication skills, and facilitating access to community resources. Strong rapport between CHWs and caregivers enhanced the effectiveness of the intervention. Future approaches can focus on supporting caregivers with especially limited resources.

Dementia Caregiving and Dialectical Tensions During the Early Days of the COVID-19 Pandemic

Caregiving for a loved one with Alzheimer's disease or related dementia presents significant challenges which were amplified throughout the COVID-19 pandemic. During this time, care partners were forced to navigate uncertain terrain as well as new and challenging relational tensions. This study investigated the experiences of dementia care partners and the relational tensions present as they managed the early days of the COVID-19 pandemic using Relational Dialectics Theory framework. By analyzing recorded support groups from the early days of the pandemic (April through June, 2020), we identified two chief tensions expressed by participants throughout their support groups: connection—independence and gratitude—frustration. Participants experienced these tensions in different ways, and they engaged in four tension management strategies ( selection, minimization, reframing, and venting and comradery) through the support group. As the pandemic progressed, participants’ tension management evolved, highlighting the complexity inherent in caring for a person with dementia during the COVID-19 pandemic.

The perspectives of people living with dementia and their carers on the role of the general practice nurse in dementia care provision: a qualitative study.

Background Models that optimise the role of the general practice nurse have the potential to deliver cost-effective best-practice dementia care in the primary care setting. Patient experience is recognised as a vital contribution to the design, provision and evaluation of healthcare services. The aim of this study was to gain insights into the healthcare needs and experiences of people living with dementia and carers as relevant to the provision of dementia care by general practice nurses. Methods A qualitative design with semi-structured interviews was employed. Data were transcribed verbatim and thematically analysed. Six carers and five people living with dementia who received care from a general practice nurse in the previous 12months took part in the study. Results Five overarching themes were identified: (1) the general practice nurse and dementia care: a golden opportunity, (2) respectful communication: talk to me and hear what I am saying, (3) person-centred information: tell me what I want to know, (4) provide support: more than just information provision, and (5) include the carer: we are a team. Conclusion This study describes the experiences and healthcare needs of people living with dementia and their carer(s) with regard to the general practice nurse role. These findings can inform strategies to support the general practice nurse provision of dementia care that meet the healthcare needs of people living with dementia and carers.

Playful framings of social robots in dementia care: reconsidering the principle of transparency in interactions with robot animals

Abstract Research on social robots in dementia care has focused on their effects, for example in relation to the patients’ wellbeing or the care-givers’ working environment. Such approaches to social robots treat them as stable objects with a singular function. Combining social gerontology with social studies of science, the current study offers a new angle by asking: How do patients and care-givers in care homes for older people establish a shared definition of the situation in interactions involving robot animals? Drawing on ethnography and multimodal conversation analysis of 211 minutes of video recordings in two care homes in Sweden, we demonstrate the embodied work by which participants in interactions establish activities with robot animals. In contrast to the ideal of transparency in social robotics, we show that a central affordance of the robots is their vagueness, which allows for their inclusion in playful interactions. Playful framings of the robots highlight their social functions and downplay care-giver–patient asymmetries. However, situations where patients resist a playful frame actualise a dilemma of social inclusion, on the one hand, and the right to not participate in play, on the other. Showing this, the article contributes to knowledge on how people age with technology; in particular, it draws attention to the limits of an ideal of transparency when social robots are included in dementia care.

The prevalence and risk factors of apathy among the Canadian long-term care residents with Alzheimer's disease and related dementias.

Apathy is a prevalent and debilitating neuropsychiatric symptom among persons living with Alzheimer's disease and related dementias, particularly those residing in long-term care facilities (LTCF). Despite its profound effects on the quality of life for both residents and their caregivers, apathy remains underrecognized and poorly understood in the context of dementia care. To investigate the prevalence and biopsychosocial characteristics of apathy among newly admitted residents with dementia in Canadian LTCF using an Apathy Index derived from the interRAI Minimum Data Set (MDS) 2.0. This cross-sectional study analyzed data from newly admitted residents with dementia from various LTCF (N = 97,789) across seven Canadian provinces between 2015 and 2019. Logistic regression analysis was performed to determine the relationship between apathy and multiple variables including sociodemographic and clinical variables. The biopsychosocial model of health was used to guide analysis. The prevalence rate of apathy among the Canadian long-term care residents with Alzheimer's disease and related dementias was 13.1%. Apathy was associated with various variables including male sex, pain, use of psychotropics, high Activity of Daily Living Self-Performance Hierarchy Scale scores, depression, aggression, severe cognitive impairment, and insomnia. Preferences for certain activities such as card games, art and craft, reading, music and exercise were inversely related to apathy while gardening was not. By shedding light on this complex phenomenon within a Canadian context, we recommend that targeted interventions and improved care strategies to enhance the well-being of persons living with dementia should be prioritized in LTCF.

Drug prescriptions in elderly hospitalized patients with cognitive impairment in the Italian Dementia Friendly Hospital project.

The aim of the study was to characterize drug prescription patterns in elderly patients hospitalized in acute wards as a function of cognitive status and staff training. We recorded clinical parameters reflecting health status and drug prescriptions at admission, during hospital stay, and at discharge before and after a short staff training on the needs of aged cognitively impaired patients. Participants aged 65 and older had a Mini-Mental State Examination (MMSE) score ≥16. The number of prescriptions, sedative and anticholinergic load, and drug-drug interactions were evaluated. Of the 116 older patients analyzed, 59 patients were cognitively impaired, and 57 were cognitively normal with an MMSE value > 24. Fifty-nine patients (28 CN, 31 CI) were assisted by the hospital health staff after training. Participants presented a widespread polypharmacy. Cognitively impaired patients received more prescriptions, more inappropriate prescriptions, had a greater sedative load, and were exposed to more interactions. Staff training had no effect on the prescription pattern. The results suggest that hospitalized cognitively impaired patients are overprescribed psychotropic drugs and have an excessive sedative and anticholinergic load. Interventions designed to improve dementia care practices in health staff that are not also designed to manage drug polypharmacy do not modify prescription patterns.

Abstract 4135206: Patterns of Lifestyle Risk Behaviors for Cardiovascular Disease in Family Caregivers: A Latent Class Analysis

Introduction: Lifestyle risk behaviors for cardiovascular disease (CVD) often co-occur. However, little is known about their behavioral patterns among family caregivers, a population at high risk for CVD. Aims: To identify distinct latent classes of caregivers of lifestyle risk behaviors for CVD and to examine the individual characteristics associated with membership in the identified latent classes. Methods: This study included 643 unpaid family caregivers from the 2019 Health Information National Trends Survey 5 Cycle 3. The assessed lifestyle risk behaviors included cigarette use, non-abstinence from alcohol, low physical activity, long sedentary time, and low fruit and vegetable consumption. These behaviors were dichotomized based on established guidelines or cut-off points. Latent class analysis was performed to identify latent classes based on these lifestyle risk behaviors among caregivers. Subsequently, multinomial logistic regression was used to investigate socio-demographic, health-related, and caregiving characteristics associated with the latent class membership. Results: Three distinct classes were identified (mean age = 55±16 years; 59.3% female; 57.1% non-Hispanic white): “overall healthy, but non-abstainer” (Class 1, 17.1%; reference), “overall unhealthy” (Class 2, 64.1%), and “inactive, but healthy eaters” (Class 3, 18.8%). In unadjusted multinomial logistic regression models, caregivers reporting greater financial hardship (relative risk ratio [95% CI] = 2.5 [1.0-5.9]), higher psychological distress (3.7 [1.9-7.3]), poorer sleep quality (3.3 [1.6-6.8]), longer caregiving hours (2.1 [1.1-3.9]), and providing dementia care (2.3 [1.3-4.3]) were more likely to belong to Class 2, relative to Class 1. In the adjusted model including the significant characteristics above and controlling for age and gender, psychological distress (2.7 [1.2-5.9]) remained significant. No characteristics were significantly associated with membership in Class 3, relative to Class 1. Conclusions: Lifestyle risk behaviors for CVD among caregivers may cluster in distinct patterns that vary by individual characteristics. Caregivers experiencing psychological distress may be particularly at risk for engaging in lifestyle risk behaviors. Our novel findings underscore the importance of adaptive lifestyle modification interventions that target caregiver subgroups with different patterns of health behaviors to promote their cardiovascular health.

The Intersecting Effects of Lifetime Experiences of Homelessness and Incarceration on Cognitive Aging and Dementia Risk Factors in the United States.

Alzheimer's disease and related dementias (ADRD) remain a pressing concern in the US, which also has one of the highest incarceration rates worldwide. Existing research has analyzed dementia risk and care among currently incarcerated and homeless populations; this paper fills a gap by examining later-life cognitive disparities facing formerly incarcerated and/or homeless individuals. Using Health and Retirement Study data (HRS; 1998-2018), we tested whether formerly homeless and/or incarcerated people had earlier onset of cognitive decline, and whether they were more likely to have modifiable risk factors for ADRD than those without such experiences. We estimated prevalence of mild cognitive impairment (MCI), dementia, and self-reported ADRD diagnosis. We also used repeated observations of cognitive functioning coupled with nested nonlinear regression to examine the onset of accelerated cognitive decline. Adjusting for demographic variables, formerly homeless and/or incarcerated participants have increased odds of having risk factors for dementia, including smoking, drinking alcohol, depression, mental illness, and discrimination from healthcare providers and police. Diagnosis of MCI and ADRD were more common among participants reporting a history of incarceration or homelessness. Nested nonlinear regression revealed that previous experiences of incarceration or homelessness-alone or together-are associated with earlier onset of accelerated cognitive decline compared to those who experienced neither. This study suggests that, even if they occur earlier in life, homelessness and incarceration experiences may increase risk of poorer cognitive health in late life. Future work is warranted to understand the lifelong consequences linked to this adversity.

Involvement of family caregivers in dementia care research: a scoping review protocol

BackgroundFamily caregivers of people with dementia are a distinct group due to the particularly stressful and time-intensive care situation at home. Despite these challenges, involving them in research is crucial to better understand and address their specific needs. However, little evidence exists regarding a tailored approach for researchers for this group considering their situation at home.MethodsA scoping review will be conducted following the Joanna Briggs Institute methodological guidance, including the databases MEDLINE (PubMed), CINAHL, Scopus (Elsevier), and PsycINFO (EBSCO). The review will include family caregivers of people with dementia, regardless of age, gender, or ethnicity, who have been actively involved in research throughout the research process. Moreover, sources of evidence from any country in both English and German are eligible for inclusion. Sources will be screened by two independent reviewers. Results will be extracted using a tailored charting tool and presented in the final report according to the research questions and objectives.DiscussionDeveloping a tailored approach to involve family caregivers of people with dementia in research and development has profound importance to both the scientific community and the target group itself.Systematic review registrationOpen Science Framework https://doi.org/10.17605/OSF.IO/PMZYV.